Going beyond ‘positive’ nomenclature

The lovely, very sweet, and very talented Kismi Toffee Bar is another blogger I would say I began reading quite recently. Soon enough, I found that she is a great writer, who loves to pen down things that are close to her, in a heart-felt and sensitive manner. The similarities between both of us amazed me, and they still continue to do so. The fact that she helps in the care of patients in her usual cheery, sweet way made me proud to know her.

I had requested her for a guest post some time back, and she obliged happily. She chose to write on something she sees every single day at work and around her, a subject she feels strongly about. I must say, her post made me think a lot too, into dimensions earlier unexplored by me.

Without further ado, here’s presenting to you…. Kismi!!

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Going beyond ‘positive’ nomenclature

I write this as a mother, father, daughter, son, sister, brother, wife, husband, grandmother, grandfather, girlfriend, boyfriend, friend, aunt, uncle, cousin, caretaker, caregiver, helper, teacher…. I write this as someone who feels and values relationships. I write this because it is on my mind every single day. And every single moment, even if subconsciously.

I request you to listen. After all, no matter how much we assure each other that it is his or her life and making any choice is her/his right, someone’s choice in some corner of the world is definitely touching our lives. In some way.

Today, I sat in another meeting. Sat through it all. Like I do every other day. But I am feeling extremely happy. Something about today’s meeting made it different.

I am one of the members of the rehabilitation team in a multi-rehab set-up here. I focus on communication, intellectual and cognitive areas and on swallowing disorders. Because we work with people with a wide range of disabilities, we are a very diverse team of professionals as well. And one of the highlights of any meeting is goal-setting and basically deciding the future for the child/teenager/adult who has the disability.

If you were to look around, you would find happy inspiring posters of children or adults with disability around you. If you read these posters or watch some movies, you will also notice that the term ‘disability’ is avoided or you are advised to avoid using it.  Many opine that disability comes with a ‘negative’ connotation. They would probably not write or say ‘disability’. And hence, you find a variety of terms floating around – differently-abled, special, unique, and so on and so forth. When I was in university until early last year, I liked these terms. They made me happy. They made me feel good. They made me feel hopeful. Now that I work with disabled people independently and see them onsite, I have learnt to comprehend and appreciate their issues with a wider perspective. While it is good to see the optimism and euphemism hovering around our little hearts and mind when we use these terms, I have learnt to agree to disagree.

Aren’t we all differently abled? Don’t we all revel in the fact that we are unique (like the rest)?

We are all differently abled. I take pride in my ability to multi-task. I am pathetic with directions on the road. You may be a great swimmer, but heights may scare you immensely.

Does reality change if you change the name?

No matter what you call the person, the need of the hour is to address her/his needs and desires, to some extent. And I am referring to all of us.

Do perspectives change if you change the name?

Perspectives do not change if you change the name. Perspectives change when there is awareness. When you try to educate someone on the real issue and present and share views in a friendly manner, that’s when perspectives change. Or widen. My best friend calling me a superstar will not make me one. Much as I hope it does. Perspectives also change when your life strongly intertwines with someone who has a disability.

Do health approaches change if we call them differently?

Not at all. An individual with hearing impairment still needs a hearing aid and/or a surgery. Or another line of treatment. It is not like you will encourage his ability to ‘not’ hear.

Are we trying to make them happy by calling them with a nice name?

Why should you use a ‘positive’ terminology to make a person feel good? You are still differentiating her/him anyway. You are basically making two groups – one without different abilities and one with different abilities. Now, that is a confusing situation. Why do we need to look at things, interpret it as a negative aspect, feel bad about it or worse still, sympathetic, and then go on to make up by coining a ‘positive’ name? I will tell you what makes me happy. Your calling me by my name. You may call me as a person with some disability, but I will refuse to be called, a disabled person. There is one big difference. It is always the individual who holds prime importance. She/he is at the zenith. By calling someone a disabled person or, worse still, as just disabled, your prioritization suffers gravely. It means you just chose to put the disability on top of the person. The individual has a disability. A little more than is common, maybe.

There is no need to shy away or be extra nice. Trust me, that would make me extremely uncomfortable if I were in their shoes.

So, because they are differently abled, will you be happy and let them be?

This one of those questions that has so many dimensions to it that finding answers becomes one lifelong journey. No matter what you call them, let us all admit this: We try to make them ‘normal’. I am ashamed to type this, but it is true. One moment we elevate disability to different ability, and then, we want to make them ‘adapt’ and feel ‘as normal as possible’. Or in some cases, give up all hope and just cling onto the euphemism.

Does that mean we leave kids with disabilities to be happy in their world? Does it mean we let the adults seek solace in the existing state of affairs?

No! Though it sounds ideal, it is highly impractical.

Firstly, we all live together, as one society. Secondly, we want their safety, and, sometimes, choosing to let them to be themselves is not safe. Thirdly, let’s admit it, it pains our heart to see them unattended to. Fourthly, every child/adult has something to say, and it is human to listen and respond.

However, enabling them to live with us cannot be single-sided. We need to constantly questions ourselves – “So, what can we do?”

I ask this because we are so focussed on getting them to acquire motor skills, communication skills, resolve weight issues, address that respiratory issue, modify that nasogastric feeding, repair that palatal cleft, improve that failing long-term memory, increase their reading ability, help them achieve the tripod grasp and then worry about a vocational attachment. Where in between all this do we all think of how we can modify our lives so that entering our lives becomes easier for them?

I speak for all of us. There are parents who have modifications in place at home for their differently abled children and teachers who help address education for such children in powerful ways. However, unfortunately, this is a small number that stands meekly, camouflaged by the huge number that corresponds to people who do not step back and think of how they can change their lifestyle a bit.

How many of the buildings around us have that much-needed ramp? Are the elevators working? Are the buttons way too high up, making them inaccessible for a person on a wheelchair? Are the toilets friendly to differently abled people? Does the public bus have a ramp leading into it? Is there sufficient space for the wheelchair to park? How many websites are friendly to persons with visual impairments? Are the taxis flashing their status in red and green only? Do all schools know of the aids available to help children with learning disability and help them excel before branding them and sending them off to ‘special’ schools? Are employment policies disability-friendly and not just limited to quota? Did you ever wonder how you could manipulate and make changes to that pencil so that a differently abled child can hold it better? Did you ever think of drawing lines on the notebook or answer script to aid his visual tracking? Are the benches in class placed in such a way that everyone can hear the teacher well? Is the teacher standing on a raised platform so that a child with hearing impairment can see her lips move?

All these are not very easy issues to handle. There will not be ideal solutions for many of these. What I am trying to emphasize is that accessibility issues have ample room for improvement. Sometimes, we overlook simple issues, but focus on developing new skills. There is a strong need for the entire process to be bi-directional.

A couple of weeks back, I met parents who had spent years and thousands of dollars trying to teach speech to their child, who is now a teenager. I asked them why they did not introduce signs or communication through pictures. They just shrugged off and said “Ah, well, others won’t understand what she expresses.” Why is our environment encouraging disability instead of enabling everyone?

Coming to today’s meeting. After innumerable meetings on how we can help children/adults with disability, today was the first time we discussed as to how we can help ourselves understand them better and make life easier for them. Ramps, wheelchairs, big signages, colours that are friendly for those with visual impairments are things you know of but, by no means, common. Not to the extent that they ought to be across the world.

Today, one of the potential employers ( of a multinational company) for students with intellectual disability, decided to put in place some small but wonderful measures to make the environment (definitely people included) friendly for all. I have this huge grin on my face now.

I can breathe a bit easy. I feel like I shouted my happiness out to the big, big world.

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A note from Kismi:

 A big thanks to TGND for having me here. I know how much I have procrastinated through drafts, but she has been an absolutely wonderful person by being so understanding and sharing her special space with me. Being a huge fan of her blog that is a medium for her to speak her heart out, I did not want to do anything less. This is one of my constant thoughts, and I don’t think I can write that clearly enough. TGND, thanks so much, and sorry for such a long post! 🙂